I tend to yap yap yap about nothing and everything. Luther's quiet, he listens. Lately, he's been even more quiet. I started talking to him about the disease, his feelings about it, I wondered if he thought about what was next. He said he didn't know. That was about all he said. I made a conscious effort to stop yapping. Usually Luther gets in a yap or two but this time, all he said was he didn't know. There was this uncomfortable moment of silence.
A few minutes went by. I asked him if he was ok. He said he just didn't have anything to say.
I'm not sure what to think about that. At dinner, I asked him a few questions about it but realized he didn't appreciate the badgering. (Yapping and badgering. Fine qualities in a partner...) So I stopped, just let it be.
But I'm just not sure what to think.
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I have this Caregiver's Guide from the Muscular Dystrophy Association. 223 pages long. I couldn't get past page 21 without crying.
I flipped through the pages. There are lots of pictures of people in wheelchairs, people with vents (the equipment needed to help breathe), pictures of people being cared for. That got me to thinking: I haven't really seen, up close, what ALS looks like.
I see it in Luther every day, to some extent. According to the Guide, he's in the early stages of ALS:
- Muscles are weak, soft, twitchy
- Significant muscle loss located in one region
- Milder symptoms spreading to other regions
- Experiencing fatigue, poor balance, slurred words, weak grip
- Needs assistance with physical tasks
I stopped reading after the late stage section:
- Most voluntary muscles are paralyzed
- Ability to move air in and out of lungs is severely compromised
- Severely limited mobility. Unable to care for own needs
- Speech no longer possible
- Eating / drinking by mouth not possible
- Assisted ventilation - either non-invasive or a tracheostomy
- Feeding tube
- Possible catheter
I understand this is a process. A 'journey' the Guide calls it. They even included a poem about it, which, frankly, right now, I could've done without. A coupon for a free drink would've been better.
As Luther goes through the stages, I understand - as I sit here right now thinking in a Spock-like, logical way - that we become more accepting of the progression. He doesn't go from weak muscles to being paralyzed in a day; over time, we'll be more "used" to what's occurring.
I understand that with each loss of function, there comes non Spock-like emotions. Sadness, anger, depression. Almost like the five stages of grief. Grieving the loss of mobility, of eating, of sleeping comfortably, of intimacy. The thing is, each loss doesn't come at the same time and it's re-grieving each time. And --- we're still in the early stages of the illness. Luther still has lots to lose.
The challenge will be to see what we gain amidst all this loss. (Insert poem here...) All the things we take for granted, even now -- he still walks, drives, works. What can I give to Luther to mimize the loss? More love? More intimacy? Less yapping? More understanding? I don't know. All of the above, I suppose. And more.
Last night, I know he wanted nothing more than for me to be with him. Cuddle up in bed and fall asleep next to him. I couldn't do it. As I type this, I think geez Lynn - what a complete bitch. But last night, I felt that wall of Spock-ness coming up. I didn't want to be close to him. I couldn't (or wouldn't) - at that moment - see past my sense of loss. I fell asleep on the couch.
This morning, as I helped him get ready for work, I took extra time to rub his back, to hug him and tell him I love him. I wanted nothing more than for him to stay home an extra hour so I could give him back what I couldn't give him last night.
Maybe that's the insight I gained today?? That old cliche of not taking any time for granted. I can't take back last night. I need to find a way to take a few bricks out of the wall when I'm feeling distant..
We're going to our first support group meeting in a couple weeks. I think that first time will be hard. It's the visual that will be shocking: the pictures affected me. How will it feel to see people in various stages of ALS? It will be difficult to see where Luther's headed and yet, it's good to see it now and be prepared.
Time to go read past page 21.
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